Healing Words

How writing about chronic illness made me stronger

Two days before Christmas 2009, my family and I were enjoying what passes for the usual holiday fare in our home: a little shopping, spending a lot of time together, playing host to friends, when in a moment that no one saw coming, the youngest of us, our eight year old daughter was diagnosed with type 1 (juvenile) diabetes. The days and weeks and months that followed became anything but normal.

Shortly after we arrived home from the hospital and began the endless routine of pricking her finger, weighing her food, and giving her insulin injections, I sat down at my computer and created an online journal to write about our family, about Lia, and especially about the struggles we faced controlling this chronic disease. One of my earliest posts to the blog described a typical day upon waking:

Hugs, check blood sugar, plan meal, determine portions, count carbs, calculate insulin need, select site for injection, give shot, cry, comfort, then eat, fret, devour information on diabetes, fret more as we regurgitate the data we learned to one another, promise to focus on what we can do at the moment, and repeat.

If you know nothing about type 1 diabetes, you probably know this: It can be deadly if not controlled, and by control I mean it requires a twenty-four hour vigilance unlike most have ever known. We’re talking so much more than just watching what you eat or living a healthy lifestyle. It cannot be managed by what-ifs, only through knowledge and unshakable diligence.

So this became our life at every meal. In the mid-afternoon. At bedtime. In the middle of the night when everyone else was sleeping. It was what we thought about, what we talked about, what we worried ourselves sick about during all hours of the day. Such is the fear that in any one of a number of critical steps we’ll make some tragic mistake. And always, always, there is the one nagging question: How did this happen. Just how?

No one knows what causes type 1 diabetes. The environment, genetics, whatever, something triggers the body to attack itself and destroy the beta cells that produce insulin, the hormone needed to convert food into energy. Without it our cells and organs would starve and eventually we would die. For a parent of a child with diabetes that is a powerful motivation to learn and learn quickly to move past the grieving stage and into providing life support.

Writing about diabetes in detail helped me do just that, but it also led me to explore how I felt about it, too, and helped me make some peace with it so that the worry and the namelessness of my worry could evolve into something less ethereal, less tiresome. Eventually, it turned into practice and as such became just another detail in the story of our lives. The emotion of her diagnosis lost its power to arouse fear and paralysis.

The great Russian writer, Anton Chekhov, began his short story Misery, about a father whose son has just died, with the sentence: “To whom shall I tell my grief?” This need—and that is what it is, a need, not a question of but a requirement for healing—will be familiar to anyone who’s suffered the emotional upheaval of tragedy. The contented heart insists that we flush out our feelings, if to no one else, at least to ourselves. Indeed, it is through this deeply intense dialogue with our subconscious that we eventually find peace.

And so began this blog, Without Envy (now called The Revelate, but hosted at the same website, www.withoutenvy.com). For others it may be as simple as jotting things down in a notebook. The important thing about the writing is not the How but the Doing. It is taking the time to acknowledge not only the new reality but then asking the question of oneself: How does this make me feel?

The answers you find will surprise you and eventually make you believe that you are not tied to the tragedies of the past but free to move forward into a better future.

I slowed my writing about diabetes as our daughter got older and eventually stopped all together. But I kept the blog alive so others could find it and take whatever they might from our experience. As a parent of a child with type 1, having somewhere and someone to share with and learn from was important to me, and I felt then, and still do, that Without Envy was one of those places.

Then, a few years ago, I did take it down, as a result of nothing really, just maintenance of the site, the uncertainty of how I might preserve it. But even then I knew it was only temporary, and now, I am happy to say, I’ve re-published most of the posts I had shared from our first year with diabetes (you can find them all here) with hopes that they can again bring some calm and mostly understanding, to some other newly diagnosed family.

I don’t expect to add any more to it, though that's not out of the question. For certain I learned a lot about myself and the use of writing to treat anxiety and find connection to others, lessons which continue to find their way into essays I write for The Revelate. Because at the end of the day there’s little difference between living life without envy in spite of a chronic illness, or wanting to live better, longer, with less.

If you’re interested in starting your own personal writing/ journaling habit, here are a few suggestions:

Quick Tips on Getting Started

1. Find a time and place where you won’t be disturbed
2. Write honestly about how you feel
3. Write at least 20 minutes
4. Ignore spelling, grammar or style (or other things the critic in your head will toss your way)
5. Write for yourself, not anyone else
6. Write in vignettes, don’t worry about capturing every detail
7. Tell a story, even a fictionalized one, if it feels right
8. Write about the future, too
9. Share with others, if and whenever you're ready, which might be never and that's okay, too

In lieu of my usual upgrade and/or donate info, I encourage you to give to the Juvenile Diabetes Research Foundation. They are a wonderful group of people, passionate about treating and finding a cure for type one diabetes. Every dollar counts!

Please click here to learn more.

Thank you.

Steve